[Congressional Record Volume 164, Number 11 (Thursday, January 18, 2018)]
[Senate]
[Page S275]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                  CHILDREN'S HEALTH INSURANCE PROGRAM

  Mr. DAINES. Mr. President, access to healthcare is on the line today 
for 24,000 Montana children. The House of Representatives is working to 
pass legislation that will reauthorize a program called the Children's 
Health Insurance Program, better known as CHIP, for 6 years and will 
keep the government open. If passed, it will then come to us for a 
vote.
  Why don't we take the opportunity before us to come together on 
issues we agree on instead of always fighting on what divides us? I 
think we can all agree on keeping Montana kids healthy.
  Let me tell you a story about a family from Helena, MT, the A-Gee 
family.
  Jaxon was a normal baby--a happy, healthy baby--until October of 
2016, when he was just 8 months old. That is when he was first flown 
from Helena to Missoula's Community Medical Center's Pediatric 
Intensive Care Unit. He was deathly ill with a respiratory infection.
  At that time, it was not clear why Jaxon had gotten so sick, but his 
parents soon learned that he had Leigh syndrome, a disease in which the 
body is not able to process energy properly, which leads to muscle 
weakness, swallowing problems, and severe illnesses with just a simple 
or a common cold. His parents quickly learned to manage his new feeding 
tube, to suction his mouth and his throat, and to put him on oxygen 
monitors at night.
  Unfortunately, Jaxon has had five more serious infections. Each time, 
he has become ill. It has happened so quickly that he has had to be 
flown to Missoula even though he has a team of pediatricians, nurses, 
dietitians, speech therapists, and physical therapists who are trying 
to help keep him from getting ill.
  As Jaxon's mom would say, when Jaxon gets ill, the only way to keep 
him from having to be flown to Missoula is to get him seen by his 
pediatrician as soon as possible so that if he does get sick, it is 
relatively minor.
  I can tell you that this family in Montana is grateful for Healthy 
Montana Kids, which is Montana's CHIP program. They are thankful for 
its providing Jaxon's insurance and the copay for his care and his 
medical supplies. His mom says that the insurance is what makes it 
possible to manage Jaxon's condition and possible to afford well-baby 
checks instead of their just going to the doctor's on an emergency 
basis.
  To add more background to the story, Jaxon's dad was disabled in a 
workplace accident, so he is home, caring for Jaxon and the family's 
other two children. Jaxon's mom works, and her employer has been 
phenomenal to her--those are her words--as they have faced Jaxon's 
hospitalizations, but the family of five couldn't afford Jaxon's care 
without Healthy Montana Kids. A helicopter bill for the ride from 
Helena to Missoula alone can be as much as $34,000, and Jaxon has taken 
that flight six times.
  This family doesn't know what it will do if the funding for CHIP runs 
out, but the family is committed to caring for its son no matter what. 
That is why I support a 6-year reauthorization of CHIP.
  Let me provide another reason.
  This is Danielle. She is 9 years old, and she lives in Deer Lodge, 
MT. When she was just 18 months old, she suddenly lost the ability to 
walk.
  Cindy and I are the parents of four children. I cannot imagine a more 
frightening moment as a parent if one has an 18-month-old child, and he 
suddenly loses his ability to walk.
  Danielle was diagnosed with a form of juvenile arthritis. You don't 
think about arthritis affecting an 18-month-old child. This is a 
disease that causes pain, swelling, a stiffness of joints, as well as 
vision problems.
  Thankfully, Danielle was started on a medication--a twice-a-month 
injection that controls the swelling and inflammation. Because of that, 
she can walk and even run again. Yet these injections are expensive. To 
pay outright for just 1 month, it costs over $6,000. Last summer, for 3 
months, Danielle was unable to get the injections. She stopped walking, 
and she no longer could go to school. Her mom had to carry her through 
the house.
  When Danielle was approved for Montana's CHIP program, she was able 
to go to the doctor's and get on another medication--an infusion this 
time. She is now back at school and running around--to quote Mom--
``like a kid who doesn't have any problems.'' Danielle loves to study 
math and science, and when she grows up, of all things, her dream is to 
be a doctor for kids. Without CHIP, Danielle's family would be unable 
to afford the medication she needs. Without CHIP, Danielle wouldn't be 
walking.
  Danielle and Jaxon and the thousands of other Montana kids and their 
families need us to work for them. So I am saddened that partisan 
politics would get in the way of access to healthcare for these 
children. We have the opportunity today to reauthorize CHIP for 6 years 
and avert a government shutdown at the same time.
  I urge my colleagues to do the right thing here, to do the right 
thing for the 24,000 Montana kids who use this important program. I 
urge them to support a 6-year reauthorization of CHIP and to keep the 
government open.
  I yield the floor.
  The PRESIDING OFFICER. Who yields time?
  If no one yields time, time will be charged equally to both sides.
  The Senator from Vermont.

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